Wednesday, April 9, 2014

…Please acknowledge that we are ill, but don’t press us for a full report. Rather than asking the standard, “How are you?” question, try, “It’s good to see you here,” If you really want to engage with us, ask, “What is this like for you?”

…Please avoid platitudes such as, “God never gives you more than you can stand.” We probably don’t want to admit it, but we may think God is giving us more than we can stand! Saying this to us is likely to hurt our faith, and in general, isn’t helpful.

…Please, don’t try to “fix this” for us.We don’t need you to fix it. We need you to care about us and let us know we are loved by you.

…Please don’t feel discouraged if we don’t become completely “well.”We are doing what we can to walk out this journey with pain, with all its ups and downs. We can’t say where it is headed, and need you to help us be patient through it all. If you become discouraged, we are likely to as well.

…Please stay in touch with us!Send us a note, text, an email, or call us. We may not be around as much, but we want to stay in touch with you.

…Please don’t overlook our family members.Sometimes we get all the attention, whereas, they get very little. The pressures on them are huge; they need support as much as we do.

…Please help us in practical ways.Rather than say, “Please let me know what I can do to help you,” offer specific support based upon your own gifts and time allowances.

…Please invite us to events and things even though we are ill.We have limited energy, but most of us still can get out and do things—we simply must plan carefully. You will really bless us, if you tell us that you will understand, should we need to cancel at the last moment. It will doubly bless us if you ask what kind of things might we need to be accommodated at the event.

…Please tell us about your life, so that everything is not about our pain. This includes telling us of your own challenges! Many believe they can’t do so because “they have nothing compared to us”. We believe we do not have the monopoly on difficult circumstances; we care about what you are going through, and want to help you where we can.

Mostly, thank you, beyond words...

for being in our lives.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

A Note to Judi's Readers:

Judi has been unable to attend to this blog due to family needs and illness struggles. She will still respond to any comments and contact emails. It is unknown when she will be able to return, however, Judi says you are always in her thoughts and prayers.

Sunday, March 23, 2014

Another post in my ongoing series “Plan Now to Feel Better”

You are likely familiar with Elisabeth Kübler-Ross’s “Five Stages of Grief”. There are all kinds of modifications of this tool which has helped people all over the world to recognize that grieving (not only of a death, but of a deep sense of loss associated with great personal tragedy) is essential to our living well in the long-term, emotionally, physically, and spiritually.

Her model, though useful, does not fit the journey of those who suffer from a severe pain diagnosis. I hope what I have developed below will provide you with a better model for understanding and moving from grief to acceptance, as well as, will help your loved ones know how to best support you:

by Judi Coleman

Descriptions of Stages-

-&-

What Loved Ones Can Do to Help

1 - Taking the Blow

I am reeling with utter shock and disbelief at finding out I am suffering from a pain disorder. I feel shaky, unable to sleep, or to think clearly; I feel numb all over and cannot focus on others' needs; I can not grasp the reality of my diagnosis.

For my loved ones: My brain is on overload. I hope you can be patient with me as I am unable to think of much else except for my awful situation. My body and mind are reeling, however, rest assured that this is normal and natural. I am not ready to problem solve or look on the bright side--not yet. This stage usually lasts less than a week before I move to the next stage, however, don’t let that cause you to overlook crisis situations, i.e. if I stop eating and/or drinking, or act in other ways that cause you great concern. If you think I need to see a professional other than my family physician, please talk to them first, to seek their input. Otherwise, it may cause needless relationship conflicts and/or cause me despair.

2 - Absorbing the Blow

As my shock wears off, I am affronted by a barrage of deep-in-the-gut emotions: brokenness, overwhelming distress, anxiety, fear, guilt, anger, etc.; I may want time to myself to process what I am going through (introvert style) or, I may want to talk to you for hours on end (extrovert style); I am forgetful, distracted, and still overlooking others’ needs, not because I don’t care about them, but because my suffering is SO HUGE, it’s about all I can deal with at the time; Lots of hurt feelings may happen in this stage, straining relationships down the road if left unattended for too long.

For my loved ones: All of the above is normal; you should not worry when I arrive at this stage. Don’t be alarmed if it last for weeks, depending upon the severity of the pain. If I am an introvert, please respect my need to be alone with my thoughts; if I am an extrovert, please allow me to talk without your attempting to lead me to resolution--I simply need to tell you all that I am feeling at this point. Should I appear to be acting in ways that cause you grave concern, please talk to a professional before approaching me with my behavior, to avoid serious relationship conflicts and/or to cause me to despair of my situation.

3 - Looking for a Way Out:

Attempting to Clarify or Disprove the Diagnosis

Positive--I begin to seek out information, hoping to find another answer or some kind of acceptable explanation for my suffering; I am likely to use the internet as my main source of information, and hopefully, I will also talk to physicians, particularly for a second, or third opinion about my diagnosis, since many who suffer pain are mis-diagnosed.

Negative--I may become so consumed by the above that I can think of little else. I may begin to grasp and straws, trying anything that even hints at possibly helping me, paying little heed to the cost to my overall health, and well-being, relationships, and finances. Or, I try to talk myself into believing I am not ill, which may cause me to act recklessly with my health.

For my loved ones: This is a stage where you can actively play a role in helping me. You can research topics relevant to me: my diagnosis, practical helps for living with pain and/or illness, spiritual resources, emotional and mental helps, etc. BE CAREFUL to seek information from reputable resources, and to avoid anything that seems too good to be true.

If you see me really overdoing the negatives above, please step in for me and get me back on track, counseling me to get help. If you find I am making up nonsensical reasons for my suffering or buying into bogus ideas for treatment, gently help me to see the issue. And, If you think I need to see a professional because I seem to be stuck in this stage much longer than seems sensical, or if I appear to be acting in ways that cause you concern, please talk to a professional before approaching me with my behavior, to avoid serious relationship conflicts and/or to cause me to despair of my situation.

4 - Realizing the Magnitude of My Helplessness

The awfulness of my pain and its short-term and long-term impacts on my life (as well as upon others) hits home; I may feel bone-wrenching SORROW, GUILT (“I am being punished,”), FEAR (“How can I bear this? How can others bear this?), OR, ANGER (“Why me?”; “God must not be who I thought he was…”); I may look for people to blame, (i.e. “My boss mistreated me so badly that my body finally gave out,”; “That quack doctor really messed me up”, etc); Finances may be of a particular concern to me, if I am losing work-time, or considering having to quit altogether, or if much of my finances is going towards my illness.

For my loved ones: I need your assurance now that you will be there for me no matter what. It will also help you and me if you begin to consider a larger support system if I am required to make many changes to my life--although I am not ready to talk about this until the next stage. I need to hear stories about others who have suffered though, survived and thrived. I also need godly counsel to point me to God’s love and abiding care for me, despite how things appear.

5 - Regrouping

My emotions are beginning to settle now; despite how much pain I am still experiencing, I am realizing that “life must go on”. I can now begin to make plans about regarding what I can do to better deal with/manage my pain. (Many in this stage say they feel like they have “woken up”--as though they had been in a dream-like trance up until this point.)

For my loved ones: You can help me turn the research we did in stage 4 into ideas and plans. I am probably ready to seek professional help for my emotions, if my personality is one that will accept this. (Even if not, please encourage me to do so anyway, or at least to talk to a pastor.) Now is also the time to talk about expanding our support system; beginning the process of seeking social security disability; creating a personal medical file for me to keep track of my journey--including information from doctor visits; list my medications, treatments, etc for reference now and later. Any ways that will help me to regain control over my life will be helpful!

6 - Moving Forward

My emotions are stabilizing, and I am ready to move on with my life; I can work towards making changes that are healthy and are good for my relationships; I no longer need to talk about my pain so much; I may begin to feel a desire to help others who suffer; I now want to give back to those who have supported me, and who are continuing to support me, as best I am able to do so; I am working though the spiritual challenges this pain has awakened in me, and am feeling hopeful.

For my loved ones:Please continue to walk alongside of me, encouraging me to pursue any positive steps I am taking. Hopefully now I am prepared to return support to you, if I am physically able to be so; and to become involved once again in others’ lives and needs. Continue to encourage me, particularly, towards healthy decisions and actions.

7 - Accepting My “New Normal”

I am no longer defined by my illness, despite the fact that pain requires my careful planning and focus in order for me to live well; I am developing new dreams; hope is being restored; I can better trust that God will take care of me and those around me; I am fully aware that I may face new challenges related to my illness which may send me back to Stage One, however, I believe I will be able to walk through these stages again when or if that happens.

For my loved ones: Congratulations!. Since those who have strong support people are most able to reach this stage, you are to be celebrated! The effort has been hard, and I may have not appreciated you as I should have, since pain often makes me overly self-focused. Thank you for giving me grace along the way, as I hope you will continue to do. I am likely to never fully obtain acceptance, because our bodies never get used to pain, unlike other things we feel. In addition, set backs may come that likely will send me back to Stage One. However, since I reached Stage 7 stage before, I am likely to reach it again, with your support.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

I’ll likely be writing more about this topic next time, so I hope you’ll come back. Be sure you’ve signed up to receive an email from me when a new posting comes out--since the way my life rolls I do not post in regular intervals! (Your email addresses remain private--even from me.)

Monday, March 17, 2014

I adore my grandchildren. My life has been enlarged wonderfully because they are alive! When I am with them, little rivers of joy run through my veins.

Who could resist this little bug of heart-stretching goodness! ...Or this pint-sized portion of smooch-a-liciousousness!

I like to think I’m a good "Mimi"; however, I caught myself doing something Thursday that has given me reason to question myself...

"Doddle Bug" and "Mooser" --our nicknames for our grands; along with my too-wonderful-for-words DIL, visited last week. It was fabulous as usual--grands had us laughing the whole time.

Well, the time had come for them to head home. I helped my DIL pack the 300 pounds of kid-mandated paraphernalia into their car. (--my best work out all year so far--) gave each lots of hugs and kisses, and sadly, waved good-bye.

…Maybe not so sadly.

I walked back into my house, and began to clean up from lunch. After a few minutes of distractedly loading the dishwasher, I realized my head was stuck on a tune the youngest grand had been “playing” on his toy guitar before he left: “Mary Had a Little Lamb”

Without even consciously recognizing it, though, I had changed the lyrics! This is what I was singing:

I love it when my grandkids come;

grandkids come;

grandkids come.

I love it when my grandkids come;

...AND I LOVE IT WHEN THEY LEAVE.

"Oh, my goodness--you did NOT do that!"

Of course, I'm only trying to make you smile. I’m not worried. I do love being a “Mimi”. One of the best parts though, as any honest grandmother will tell you is this:

Tuesday, March 4, 2014

I’m writing today in hopes to encourage you, as I have been encouraged this past week.

A book I’ve owned for who-knows-how-long, appeared mysteriously on my bedside stand sometime last week. Eyeing it there, each time I reached for a tissue, I finally reached for it when I became tired watching too many DVR’d NCIS shows. (That’s how un-plugged I am most of the time to how much God longs to answer my prayers for help.)

The book is called,Then Sings My Soul: Special Edition, and contains the sheet music to well known hymns ...(which is lost on me because I can’t read music--but I like to make up the tunes to the hymns I don’t know--and often to the ones I do know!)... along with the stories of faith that surround them. The hymn I happened to flip to--more accurately-- the one the Holy Spirit placed open before me, was “Turn Your Eyes Upon Jesus” by Helen H. Lemmel. I even knew the tune to that one!

Here's the words in case they are too hard to read above:

O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!

Refrain:
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

Through death into life everlasting
He passed, and we follow Him there;
O’er us sin no more hath dominion—
For more than conqu’rors we are!

His Word shall not fail you—He promised;
Believe Him, and all will be well:
Then go to a world that is dying,
His perfect salvation to tell!

This hymn, composed by Helen Lemmel, a woman who found music to be her nourishment and strength. She was born 151 years ago in England, and studied music professionally. Her life became one of seeming tragedy when the man she married left her after she became blind. (I couldn't find anything on the web that explained her blindness--sorry.) She faced other sadnesses as well, according to the writer who adds, “Helen struggled with multiple heartaches during midlife.” No further details are given.

Helen was inspired to write “Turn Yours Eyes Upon Jesus” when she was 55 years young, after reading a pamphlet with the following quote: “So, then, turn your eyes upon Him, look full into His face and you will find the things of earth will acquire a strange new dimness.” Helen later said that the chorus of the hymn came to her immediately, without a conscious thought of its rhyme or note. Within the week, she’d completed the hymn.

It doesn’t appear that Helen’s life became easier in her later years. When she was “advanced in years” she was practically destitute, living in a single sparse bedroom, a dependent of the government. Her joy and enthusiasm, however, captured the heart of pastor, Doug Goins and his wife, Kathryn.

They developed a close relationship with Helen who, according to Kathryn was always composing hymns. “She had no way of writing them down, so she would call my husband at all hours and he’d rush down and record them before she forgot the words.”

Helen had a small plastic keyboard by her bed. There she would play, sing and cry. “One day God is going to bless me with a great heavenly keyboard, “she’d say. “I can hardly wait!”

Helen wound up writing nearly 500 hymns over her lifetime. Despite all her difficult life situations and tragedies, she chose joy; through her hymns others are drawn closer to the heart of the joy-giver Lord!

I needed a fresh reminder of the big picture.

It helps to know of the stories of those who have traveled through their own difficulties,

and made it to the other side.

Helen had a beautiful way of responding to people who would ask her how she was doing in the course of casual conversation, as further indication of the depth of this woman's struggles and reliance on the Lord as the source of her joy and strength. I am always at loss as to how to respond to someone who asks me how I am in a casual way--because I am always in pain and want to answer truthfully so that people do not wrongly think I am no longer suffering; however, I also don't want to come across as complaining, because the Lord is my provider. I’ve sought for many appropriate ways to respond throughout the years.

No response has ever seen quite so fitting as the one

Helen often gave to those who asked how she was:

“I am doing well in the things that count.”

I am (most often) doing well in the things that count: I am at peace, without fear, looking forward to life, happy, joyful… Not always, though…how much more I need of the Lord! I will be even more well when I do this…turn my eyes upon Jesus; look full in his wonderful face; and the things of earth will grow strangely dim in the light of His glory and grace.

Wednesday, February 12, 2014

Note: You should read Part 1 of this topic before reading this one, so please go back and read that first if you haven't.I hope you assessed your pain, according to the PQRST Assessment I posted on January 31st. Regardless of how long you have been living with severe physical pain, it’s a good idea to assess your pain once a year.

I completed the assessment, as well, which gave me new possible leads regarding a pain-disorder I have, which is secondary to my trigeminal neuralgia (TN); pain I began to experience to high-pitched sounds after my first brain procedure in 2006. I might experience what sounds like a jet landing in my front yard, when a neighbor turns on a leaf blower, for example. It’s called “dysacusis”.

It grew worse quickly, which led me to seeking help from two physicians who were able to diagnose me, but neither couldn’t offer hope for improvement. Each had their own theory about what caused it. The first hypothesized that it resulted from the original virus that most likely caused my TN; he believed the virus continued to cause mini seizures in my deep-brain--specifically in the amygdala body--which serves an olfactory (smell) function, along with others that will scare the heck out of anyone to think that seizures might be occurring inside there.

The second physician believed it was a resulting consequence from my first brain procedure where a mistake was made, resulting in damage to at least three of my cranial nerves, including my olfactory nerve.

Thankfully, although they could not offer me any hope for getting better, the first physician, an ENT, was able to create specially-molded earplugs for me with varying levels of sound masking. These allow me the ability to be in public more than I would be otherwise.

That was about three years ago. Taking the PQRST Assessment confirmed my belief that the disacusis has steadily worsened, and motivated me to dig deeper, hoping God might lead me to help.

As I prayed, I knew what else to do...which what I advise you to do once you’ve completed the PQRST Assessment, and have some better insight into your pain.

Go to the Internet, Before Going to the Doctor

Physicians may tell you this is a terrible idea, giving you examples of patients who completely misdiagnose themselves via the internet, possibly even refusing to believe their doctors over what they think they’ve learned on the internet.

Physicians (as well as family members and others!) may be concerned that you’ll become too frightened or too anxious about everything that could possibly go wrong, which may work against your health rather than for it.

All valid points.I hope, though, you are able to take advantage of the internet. Besides the holy Word of God, I can’t think of any other source that provides more information, both technical and practical, that can better equip us for seeking the best for our health.

Tips for using the internet to learn and help you diagnose your own pain. I’ve drawn upon KevinMD.com a prominent social media platform , to write these three tips:

Keep a breadcrumb trail as best you can.When we’re online we forget where we go and often don’t know who we’re listening to. This can lead us to become confused between what might be real information, versus personal anecdotes and stories. I suggest you create a document to copy and paste links with pertinent info for your reference yesterday, or else add links to your history.

Check the credentials. Look for academic medical centers, or known health care institutions. Look for similar information between sights so that the validity of what you are finding is increased. I also will look for research; usually at least summaries of research are posted before I am blocked from medical membership sites.

When perusing patient advocacy sites, look for the values of the organization, size of membership, how long its been active, realism of information, etc.There are many patient advocacy sites that are excellent-just watch out for ones that are promoting a particular agenda, such as ones dedicating to slamming the medical field, or promoting only one treatment. At this point, you are looking for a good review of everything and anything regarding your pain symptoms.

Be wary of advertisement-laden sites. KevinMD.com suggested that such sites can be edited to meet requirements in tone, scope, or opinion by advertisers. So I’d be wary of those.

I have one more tip, that is so important, it needs to stand alone:

Dive no deeper into the internet than

you have the faith to bear.

As soon as you come across information or read about others’ experiences that cause you to fear, despair, or to become discouraged, turn the computer off! That’s as far as your faith allows you to go right now.

I have had to walk away from the internet many times; had to do so again just two nights ago. It gets easier.

What doesn’t seem to get easier for me, is how to try to pack eight years of experience into a manageable posting! (I have probably written a couple of megabytes worth of text on this topic--and I pray I’ve chosen well what to include and what to discard!)

When I walk away, it helps me to remember the truths below. They are true for you too, if you have come to terms with the fact that you cannot control your life and the people around you in order to be complete; instead, it is by recognizing and giving up control to the One who has the better plans, you are made whole. In Christ alone.

...will always have hope, despite what I see with my eyes. (Ephesians 1:12)

...will never be overlooked .(Ephesians 1:13)

...can obtain peace no matter what is going on in my life. (Ephesians 2:14)

...can approach God with confidence, knowing He will give me mercy

and help. (Ephesians 3:12)

...can trust that there is a purpose for my sufferings. (Ephesians 3:13, 2 Corinthians 1: 3-5)

...can never escape from His love. (Ephesians 3:18)

...will live forever in a glorious place without pain! (Revelations 21:4)

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Armed with Information

The internet turned out to be a great resource for me last week.

After completing my own assessment, and armed with new information, I was pleased to let Google open new avenues of information for me.

I learned that there are two forms of hypercusis, and the kind I have is associated with damage to the auditory nerve, rather than the scarier thought of ongoing seizures in the amygdala (as the first physician theorized.) My studies also pointed out some symptoms I hadn’t considered to be part of the hypercusis, which have come as a relief to me.

Even better, through following a few other links, I came upon some interesting treatment options, that have only been around for a year or so, because of new technology. I am looking forward to finding out more about these.

Overall, it was well worth the two to three hours I spent researching sites, in addition to putting together a word processing document where I copied and pasted various information to reference later.

Now it’s your turn. Time to go to the internet, or to go again. Happy Hunting!

Important Information About Those Impossible or Impossible-As-Of-Yet to Diagnose Pain-Related Disorders

If you are one of the unlucky people who has come up empty handed regarding a diagnosis, I hope this section will help you.

Although my primary pain syndrome is TN, I have developed, over the years, other pain syndromes that remain undiagnosed. One of the worst are severe head aches, which I usually call “migraines” although they do not truly fall in a migraine category. When pressed, my neurologist told me they were “transient idiopathic migraine-like headaches”.

Medicine has lots of big words for simple things. Transient...meaning coming and going at random times. The word makes me picture my head ache as though it was a displaced organism, wandering around inside my brain looking for a place to fit in.

Idiopathic. The word has its roots in the Greek language, with "idio" meaning "one's own" and "patheia" meaning "suffering or feeling". When I am not feeling very kind, I tend to call it , “idiot-pathologists”. When we cannot get a diagnosis, it doesn’t mean we aren’t ill; it just means pathology has failed us, “Those idiots!”

I’m exaggerating my feelings...somewhat. For, I am shocked that in 2013 the American Psychiatric Association, broadened its definition of “Somatic Symptom Disorder” to essentially, make it easy for physicians to label their patients who experience pain of unknown origin as “head cases”. A colleague of mine, Richard Lawhern, is leading the charge to change this awful decision. Learn more through a patient advocacy site he serves: www.livingwithtn.org

When you are faced with experiencing a pain syndrome that is not diagnosed, or diagnosed as of yet, I recommend you create your own diagnosis!

Some people like to have fun with it it: “IDKBIKM Disorder” (I-Don’t-Know-what it is-But-It’s-Killing-Me Disorder)

Or, create an informed name.It serves to give you the proper respect that your pain requires to people who demand a diagnosis to care. I’m not suggesting you intentionally deceive anyone; simply that you have a name you can use as necessary to receive proper respect and consideration.

Here’s how it works:

1 - Using all the information you’ve learned via the Assessment and through on-line resources, consider what system of the body best fits:

You will gain more respect and be able to advocate for yourself if you tell someone you have neuropathic leg pain, than to say you have an undiagnosed leg pain...it’s just how it is.

3 - Go one step further if you feel the need to assert yourself with inconsiderate people around you, by including a Latin term. I only spent a few minutes looking these Latin words up on the internet--and didn’t consider grammatical context. I know you’ll do a better job:

I’m sure some reading this, believe this is going way, way, way too far. For others who have suffered for years without a diagnosis, coming under scrutiny and condemnation from others... I offer these ideas without apology to anyone.

Blessings and safety,

Judi

This is what it looks like in my neighborhood tonight…with more to come. I pray you are safe and sound…and warm.